August, 2008, I was diagnosed with an epidermoid brain tumor (a benign neoplasm of the brain, also referred to as an epidermoid cyst). It is sitting in my right cerebellopontine angle (CPA) on the Pons and brainstem (back, right side of my head) and has started causing partial seizures. According to the MRI, it measures 3 cm x 2 cm x 1.5 cm. The epidermoid tumor is congenital and a very slow growing tumor. It’s something I’ve had my entire life, formed during fetal development.
How did I find out about this? Here’s my story…
On August 7th, I experienced what would be the first of many seizure episodes while at work. At the time, I had no idea what was going on. I heard some girls arguing and at that moment, I felt a déjà vu feeling. No biggy, everyone has those from time to time…right? Well, following that déjà vu experience I began feeling this rollercoaster and nausea sensation. I became really hot, a little sweaty and felt fatigued. It lasted about 30 seconds – 1 minute. I thought that was weird. . .got myself a cup of water and sat down. Everything was fine the rest of the day.
On August 8th, I experienced about 4 more similar episodes while at work, either triggered by something that happened at work or a smell. This déjà vu and/or strange smell were either “auras” or a “warning sign” that a seizure was about to occur. It’s amazing how the brain works. . .isn’t it? Well, I felt like I was going crazy and after the 4th episode that day I left work and went to an Urgent Care facility (walk-in clinic). The PA had some blood work completed. He had no idea what was going on. He called me a few days later with the results – everything looked great. He said he could refer me to a Neurologist, but it didn’t seem serious, so I told him, it’s ok. I’ll call back if I have any more episodes.
In the next 24 hours I did have another episode. I decided to Google my symptoms (feeling déjà vu and sick) and found forums about temporal lobe seizures. As soon as I read some of the stories, I just knew this is what had to be going on with me. So, I called the doctor’s office back and they referred me to an Internal Medicine doctor. I also asked to be referred to a Neurologist. I couldn’t get into the Neurologist until the end of September, so I went in to see the Internist right away. The Internist made the situation seem not very serious and stated that the chance of these symptoms being a result of seizures were only 10%. However, she did order an MRI and requested that I get an EEG. I had my MRI that same day. The Internist said she’d call me the next day with the results. On the morning of Aug 21st I received a call from the Internist’s assistant asking me if I had time to come in to see the doctor. Scared, I went as soon as I could. I was given a copy of my MRI report which stated that I have an epidermoid tumor. I was sitting in the chair; the Internist asked if I had any questions…I had no idea if I did. I didn’t know what this report said or what any of this meant. She offered little information. So I went on my way and set up an appointment with a Neurosurgeon hoping that he’d be able to answer some questions and provide me with more information.
On September 4th, I went in for an EEG. The report ended up showing that I have epileptiform discharges; however no seizure activity occurred during the EEG testing. During another trip back to my Internal Medicine Doctor, she explained to me that this report confirmed that I am experiencing seizures as a result of the epidermoid.
I met with the Neurologist in Alaska later that month (also the neurologist who read my EEG test). He agreed that I am experiencing what are called partial seizures. He set up a treatment plan for me and asked that I follow up with him. I then met with a Neurosurgeon in AK. He also agreed that I’m experiencing partial seizures, and that they are being caused by the epidermoid tumor protruding up into my temporal lobe. I was diagnosed with temporal lobe epilepsy – partial seizures. Darrell (my husband) and I asked this Neurosurgeon many questions. He was unable to give me any hard facts on how many epidermoid surgeries he’s performed or what his risk statistics were. He also couldn’t tell me if he’d be able to remove the entire tumor. I wanted more opinions. . .
Removing the entire tumor is important so that the tumor doesn’t grow back.
Researching for me, my dad came across a really great website about epidermoids. I joined this support group/discussion list which ended up being a huge blessing to my life. I also began doing my own research about seizures on Epilepsy.com. I had no idea how many different types of seizures there are.
I received numerous emails filled with advice, encouragement and support from the “Moids” community. So many members of this community were willing to share their personal stories with me. This group led me to a world renowned neurosurgeon in North Carolina named Dr. Takanori Fukushima (Dr. F). I’ve scheduled surgery with Dr. F for this upcoming April 21st. Before making my final decision, I did meet with a couple of other Neurosurgeons in the Seattle area as well as a 2nd Neurologist. These doctors were all very competent and personable. However, I couldn’t get past the amazing testimonies I had heard from others about their experiences with Dr. F. I have yet to find a neurosurgeon more experienced than he is. He reviewed my MRI and stated that he’d be able to remove the epidermoid as a onetime surgical cure through a minimally invasive keyhole approach (an approach he designed where he enters the brain through a small hole the size of an old skeleton keyhole). I’ve also been told that there is a very good chance that surgery will cure my seizures. Risks of surgery would be a 1-2% chance of CSF leakage or would infection. Dr. F has performed over 200 epidermoid surgeries (which is a lot since epidermoids are very rare).
So, that’s my story. . .life has been pretty stressful lately dealing with both the epidermoid tumor and partial seizures. But, thanks to the amazing support of my family, friends and the Moid community I’m getting through this. I’m looking forward to getting this thing out of my head and moving on with my life.
If anything comes of this story I’m sharing with you all, I hope that everyone will become their own “Health Advocate.” If I hadn’t called back the PA and ask for a referral. . .If I hadn’t googled my symptoms and found out that I might be experiencing seizures. . .if I hadn’t suggested this to the Internist. . .who knows. Who knows where I’d be today and how long it would’ve taken me to find out that I have an epidermoid tumor.
Love to you all and God Bless,
Update: Kelli had a successful surgery for removal of her epidermoid tumor in April, 2009. She has since married, and is mother to Nora and William, twins, born in 2013, and new baby girl, Eleanor, in 2015.